Kay107

I never have it continuously, but when it does happen lying on my stomach with my arms over my head helps, or if I'm sitting just putting my arms over my head.

I have been wondering about this recently. My max should be 190, but it often hovers around 250 during workouts. Luckily my workouts are usually pretty short, but if a longer one comes up (more than 25 min) I slow way down, just can't sustain it.

I am on Midodrine and also have almost normal BP with sudden drops. I have only been on it for a couple weeks, my dr didn't warn me about laying down either. It has helped me so far, although I had to go to a higher dose.

Mytwogirlsrox, I am addicted. Have been doing it for almost a year and a half. I go at my own pace, just compete with myself, and I love it. When I experience a flare I adjust as needed and continue on. I had never run more than one mile in my life and within a few months of starting Crossfit I decided to try a 5k and didn't have to stop once. We never run long distances in the workouts, but my endurance had built that much from what we were doing.

I tolerate exercise pretty well, but it definitely does not help with my symptoms. I have had POTS for twenty years (since I was 9). Throughout those years I have had times of almost-normalcy and all different degrees of flares. In high school and college I was an avid tennis player, and now I do CrossFit. When I have a flare my workouts are certainly affected and I see the difference in what weight I can lift and how many times I faint after certain movements, but I have never noticed my exercise having an effect on my condition.

This happens to me also. It usually happens when I am trying to go to sleep and I HATE it. I can't stay still and I can't fall asleep. It also happens if I think about it...like right now because I am reading this thread . It feels like I get off rhythm and I can't get it back no matter what I try. Glad to know it's not just me.

Everyone was supportive of me becoming pregnant. My doctor was fine with my decision not to take meds during the pregnancy, but I was not allowed to do much so that my heart rate would stay down. I had terrible morning sickness the entire time, which I have read can be associated with POTS, but not much info is really out there, or wasn't when I was researching anyway. I can't remember whether the maternal fetal dr or my EP wrote a letter to the hospital anesthesiologist describing exactly what type/dosage of anesthesia they should use should I end up needing a Caesarian, which came in handy because I had an emergency C-section 60 hours into labor. My son has had no problems and is healthy. He is three now. Immediately after birth my symptoms worsened, then got way better, and now are worse than they have ever been--a constant ebb and flow. Good luck! (My only diagnosis is POTS.)

My father has severe PTSD and spent his career studying PTSD and treating combat vets for it. He feels convinced that I have 'secondary' or 'intergenerational' PTSD from living with him and his PTSD and that my POTS is how I manifest it. I would have to spend years studying the idea in an academic setting to really come to a credible opinion on the topic, though. It would be interesting.

I am going to start 2.5 mg 3x/day. Neither my EP nor the pharmacist mentioned keeping track of my blood pressure but I've noticed many of you seem to have done so. Is that something that is important with this med?

Thanks for your replies. I feel better about giving it a try

Hello, I am 29 and have had POTS since I was 8, but was not properly diagnosed until the age of 24. My main symptoms are syncope, near-syncope, and lack of energy. I go through periods of time where my symptoms are almost non-existant and then have flares of varying degrees. For the last two months I have experienced the worst flare I've had since 2007 (when a dr mistakenly diagnosed me with epilepsy and put me on Topamax). I tried Florinef for this flare but we had to discontinue it, and my dr. has prescribed Midodrine. I have not started taking it because I am leery of the side effects. While I don't like fainting and constant lightheadedness, I have learned to live with those things due to the long period of time it took to get a diagnosis. My dilemma is that I am an avid Crossfitter and this flare has really affected my energy level when it comes to the gym, and of course I do pass out after certain movements. This is the only time I feel really limited by my condition. For those of you who have taken Midodrine, would you say that the side effects are worth it in a situation like mine where my symptoms are mild enough that they really only hinder one area of my life? I am struggling with the question of whether I should just accept that I must slow down at the gym and lift less weight or take the Midodrine and risk the side effects. I feel kind of silly for asking but I really am in a quandry about it. Thanks for reading.